Tuesday, September 1, 2015

A New Challenge and Opportunity

  The Children's Miracle Network Hospitals is sponsoring a "27 Day Miracle Fitness Challenge" to foster fitness while raising funds for Children's Hospitals across the country. I have signed on and made the commitment to 27 Days of Fitness. My intention is for this commitment to lead to a habit of fitness. They say it takes 21 days for something to become a habit. Well, 27 days should cement it in place!

  Confession time, I am NOT an athletic person. All my life the only physical activity I liked was walking. Walking will be part of my 27 days; however, I will also do yoga -- which I do like and was what I used last year to get my strength back after my cancer treatment caused me to be clinically malnourished. In addition, there is a fitness studio near my house I am going to investigate. It's a local small business (Yeah for small businesses!) that offers a variety of classes.

  Today I weigh 132. Not bad. I'd like to lose 8 to 10 pounds, but not a necessity. What is a necessity is getting in better shape. I am not a couch potato. I don't watch TV. But I am a Chair Pear. That's just as bad.

  Wish me luck! I'll touch base periodically to let you know how I'm doing.

Tuesday, October 14, 2014

Even Better Good News, but...

I finished my treatment August 13th, but the doctors and nurses warned me I would have a long healing time due to the nature of my cancer and how much the treatment took me down. My blood chemistry was a mess, I was malnourished and severely dehydrated. I lost 37 lbs. in less than three months, had no taste buds, and only half of my saliva glands worked. From the bottom of my lower lip to the top of my breasts my skin was dark red/tan from the radiation treatments. I had to sleep sitting up due to mucus drainage that would choke my windpipe if I laid down.

I was prescribed strong pain medicines and encouraged to use them as I needed to eat despite the pain in my throat from all the radiation. Slowly I did eat little amounts, though everything tasted like salt, even drinking water tasted like salt. Since I had an IV port in my chest, we did hydration treatments every evening from home. Ken was great with helping with that.

I'd created a healing space for myself in the living room using Ken's recliner as my "center." I put pictures that were important to me nearby along with items that made me smile in my line of sight. While "medical" stuff was on a small table next to me, I had a basket of art supplies and reading materials on the floor on the other side of the chair. The medicines I was on made it difficult for me to focus on reading for long, but I could color and draw. So I did, and I lived in that chair morning and night. My cat, Pyewackitt, laid on the chair arm next to me, keeping me company.

To the surprise of my doctors I was off all pain medicines in four weeks and I showed signs of good taste bud regrowth. Now, eight weeks later, the doctors continue to be surprised at how quickly I have healed, especially given how bad I had been. My blood chemistry is almost returned to normal, only my immune system still needs a bit more recovery as does my strength and stamina. My skin has lost most of the dark coloration to where it looks more natural. Most all of my taste buds are back, even the taste buds for sweet, which are generally the last to come back. I'm eating more, but need to have water to drink with all meals since I lack some of my saliva glands. These will not return.

I had my after treatment PETscan last week and Hurrah!, no sign of cancer. I was elated, but the doctors soon brought me down to earth. The PETscan, they said, is not definitive as it does not reveal cancer below a certain size. This will be verified by a larynscopy October 27th. Then blood tests October 30th will show if my blood chemistry has returned to normal. It is only after all this that they will say I am in remission (they never say cured with cancer).

In the meantime I am walking more and thinking of returning to yoga for core strength building, especially since I am a new size! I am also doing research on the science behind healing spaces as I think it made a difference for me.

Friday, August 1, 2014

Good News -- I think

Thursday the oncologist made the decision that two chemo treatments were enough. No more chemo!

I had been treated with a high dosage from the beginning because of the type of cancer and I did not do well with it. Because of that, and because of how well my radiation treatments are going and I have only had to reschedule two sessions, the oncologist and the radiologist decided any benefit from the chemo for the cancer would be offset by the damage from the chemo overall.

They do feel confident we will get rid of this cancer. The decision to do both chemo and radiation was predicated on the stage 3 size of the tumor; however, it was just over the size so that also played into the decision to stop at two treatments.

So, Good News! --- I think.

Wednesday, July 30, 2014

A Milestone

My last chemo therapy session is Thursday, July 31st. I should be jumping for joy. Instead I am filled with anxiety and apprehension. Chemo has kicked my butt. Hard. Nausea is horrible, this last time I haven't had any days without nausea and vomiting has become common. My brain is foggy, I swear my eyesight is a little off the glasses prescription, and I don't trust myself driving.

I really can't blame the Chemo for everything. The radiation has had a hand in my daily situation, too. I've had 24 sessions of radiation, 11 to go. The radiation does play a role in the vomiting since it is my tongue that is getting the radiation, some things I eat or drink cause gag reflexes. The radiation is also causing my neck to darken and sores to appear on my neck. I put on Silverdene three times a day. Overall, my skin is getting more blotchy looking. My radiologist says much of the blotchy appearance will even out in a couple of months after we stop radiation. I certainly hope so or I need a good recommendation for a new foundation. Probably Hollywood strength!

Good news: no hair loss and I'm down 15 pounds in weight. I'll take the good where I can get it.

Thanks are over due to my neighbor Jan Houston, my daughter Tammy Griffin, and my significant other, Ken Sanchez for chauffer services. Ken has been fantastic at arranging his schedule to make sure he can attend the doctor appointments with me, If he didn't, my chemo brain would likely forget what I am being told. Yes, it is that bad.

Friday, July 11, 2014

It's what you don't expect....

I had the best intentions in doing this blog at least once, it not twice a week. Well, that didn't work as planned.

I had a rough time with my first chemo treatment. Headache, sick to my stomach and extremely dehydrated. I spent most of the time in bed with a "don't bother me, don't even come near me" attitude.

The AZoncology center added a midweek hydration appointment and added another medication to the anti-nausea regimen. These actions helped; now I have another problem. The nausea medicine impairs my thinking. I can't think of the last word in my sentences, numbers get reversed, and my thought processes have s-l-o-o-o w-e-d. This side-effect freaks me the most. I described it to the doctor yesterday as jogging on land versus jogging in a pool in chest-deep water.

Okay, what else have I forgotten to share......

The MRI showed the size of the tumor to be just into the Stage 3 cancer range, 4.3cm. The treatment plan is radiation five days a week for eight weeks; and chemo of 170mg of cistplatin (changed to 140mg yesterday due to all the side effect problems I had) on day 1, day 22, and day 43. After the treatment plan is complete we have to wait 30 to 60 days before I can have another PETscan to see if all the cancer is gone.

Monday, June 16, 2014

Hurry up . . . and wait

Went to the oncologist today hoping to get my cancer staging diagnosis and the "plan". Well, that happened, sort of.

The PETscan showed the cancer was localized but wasn't conclusive to show if the lymph node was involved as well. The MRI of the neck done on Saturday was to provide that clue. Unfortunately, the oncologist hadn't received that report yet. Now mind you, I had a brain MRI done at the same time and she received the brain MRI report, just not the all important one for the neck. --Oh, in case you are wondering, the brain MRI was normal, or as normal as I'll ever be!

Bottom line is, we caught the cancer early. Because it is an aggressive form of cancer, the treatment will be aggressive. Three doses of chemotherapy spaced three weeks apart, radiation five days a week for seven to eight weeks. And they have changed the prognosis of no hair loss to possible hair loss. Sigh.

If my health insurance carrier gets their act together with all the approvals, we should start the chemo and radiation on Thursday. I hope the approvals come through. While I am dreading the pain they tell me I will be in, I do want to get going with the treatment. If I could have started treatment the day I was told I had cancer, I would have done so. Waiting adds to the stress.

Speaking of stress, I have a few theories on ways to reduce stress using creativity. I will be blogging about my theories and personal experiences in putting my theories into action as I go through this Cancer whirlwind. If you are interested in stress reduction through creativity, visit: WWW.unleashbliss.com.

Saturday, June 14, 2014

Just a Sore Throat

The sore throats started in August 2013. Scratchy nuisances that had me wondering if I was coming done with a cold or if an air-born irritant could be to blame.  The sore throat progressed and I went to an urgent care facility where they did a strep test. It was negative, but since a post-nasal drip had begun they gave me an antibiotic and called it a sinus infection.

The sore throat improved, but didn't go away. Since I have an health plan that allowed me to see a specialist without a referral, I set up an appointment with an ENT, Dr. Peter Kaiser.

Dr. Kaiser did an laryngoscopy of my throat. He saw a white spot straight back in my mouth that looked like a sore, the type you would get on the roof of your mouth when you eat something too hot and burn yourself. He ordered a CT scan and a barium swallow scan to see if there was anything else since my throat pain extended to the juncture of my head and neck. Both of those tests were negative for anything concerning. Dr. Kaiser prescribed a steroid to shrink the swollen tissues and a nasal spray to help control the post nasal drip to give the sore spot an opportunity to heal. I went back a couple of months later for a laryngoscopy recheck. The white sore at the back of my mouth was gone, but I was still suffering from sporadic sore throats and sometimes earaches. Dr. Kaiser suggested allergy testing. I didn't think it was allergy based and since it was almost Christmas I put off allergy testing.

By February 2014 the sore throats were back on an almost daily basis along with earaches. I did an Internet search on chronic sore throats and found several articles about acid reflux, particularly LPR, or silent reflux as a possible cause. I knew I had GERD, I was already taking an acid pump inhibitor medicine, and the symptoms matched, so I started on a low acid diet, eliminating carbonated beverages, citrus, tomatoes, onions etcetera from my diet and started buying water that had a higher PH value, like Evian and Fiji water. These steps did relieve the worst of the pain, but did not make it go away. In March I made an appointment with my gastroenterologist. This gentleman doubled my dose of medicine and said to come back in August. Needless to say, I was less than happy with this doctor's approach.

By April the sore throats were 24/7 and were accompanied by an earache in my left ear. I suffered through it since the change in diet did help reduce the pain but by mid May I had had enough. I went back to Dr. Kaiser. He did another laryngoscopy and this time saw some bumps on the root of my tongue and on my left tonsil. He said I should have these biopsied.

May 30th the biopsies were taken. On June 9th at 3:30 pm I received the results: the tonsil tumor was benign. The base of the tongue showed basaloid squamous cell carcinoma.

Medical literature on the Internet says basaloid squamous cell carcinoma (BSCC) is an aggressive form of squamous cell carcinoma (SCC). Causes are generally tobacco, alcohol, or HPV.

That diagnosis was like entering a whirlwind. Wednesday, June 11th I met my oncologist and radiologist, both dynamic women (more on them as this blog continues). Thursday was a PETscan, Friday a mask was made to hold my head rigid in place during radiation, and today I will have an MRI of the head and neck. Monday, June 16th I will meet with my oncologist to learn the battle plan.

And so it begins.